One night last week, with not a whole lot going on, I strolled into the MICU to say hello to my friend Tom, who was working overnight.
"Wanna go for coffee?" I asked.
"Can't," he said, leaning against the nurse's station. "Probably gonna code the lady in room five sometime in the next half hour."
I thought he was kidding; people anticipating an impending resuscitation are usually too preoccupied to lean on things. He saw my raised eyebrow and explained: the woman had been terminally ill for months. At her daughter's insistence, she had had every life-prolonging intervention, even beyond the point of medical futility. Now, she was actively dying, breathing ataxically and leaking fluid from her blood vessels at an impressive rate. Her daughter had been called and was on her way in, Tom said, but the patient wouldn't make it another fifteen minutes without ACLS.
"Do you want me to hang around?" I asked.
"Got anywhere else to be?"
I checked my email. I picked a hangnail. I leaned on the nurse's station next to Tom. Finally, a nurse walked up and grabbed his elbow. "It's time," she said.
We went through the usual algorithms at the usual pace, only without the usual sense of urgency. At about five minutes in, she was pulseless, with the monitors demonstrating erratic cardiac activity. Glances were exchanged around the room, but we kept going. It was quieter than most codes I've seen.
At ten minutes in, a nurse standing next to me said something out loud: "Could someone watch down the hall for her daughter? She doesn't need to see us doing this to her mom."
The charge nurse replied: "No, let her come right in. This is exactly what she needs to see."
A few moments later, the small crowd near the door parted to allow in a petite blonde woman. The resuscitation was so quiet that I could hear the sound the mattress made when she rested her elbows on the bed. As an intern did chest compressions a few centimeters from her face, she pushed her mother's hair behind her ear and whispered to her. I could not hear what she said.
We watched her do this, then watched her stand and turn around. She said, to no one in particular, "You can stop now."
It has often seemed to me that witnessing a loved one's resuscitation--especially a failed one--would be the worst punishment imaginable. It's difficult to understand what meaning emerges from seeing a loved one surrounded by chaos and needles and beeping machines, their ribs cracking and blood all over the bedclothes. I wonder how much worse that image might make a person's grief, and how much more graphic it might make their nightmares.
Despite my own misgivings, however, families are asking to attend resuscitations of their loved ones. Even stranger to me, they're usually glad they did.
In one review article on the subject of witnessed resuscitations, families who had been present for a loved one's resuscitation overwhelmingly said they would choose to be present again. Their reasons? Witnessing the resuscitation "helped them comprehend the seriousness of the patient's condition and know that everything possible had been done, and it eased their grieving." Indeed, in one teensy study of family members who had witnessed their loved ones' failed resuscitations, scores on one validated grief questionnaire suggested that there was a real difference--for the better--in the grief suffered by witnesses compared to non-witnesses.
Still, the perceptions of the people actually doing the resuscitation substantially limit family presence during resuscitation, much as they nearly did in this patient's case. A more recent review of staff attitudes suggests that on the whole, most see more risks than benefits in family presence. Many staff in the studies reviewed cited concerns for psychological trauma to witnesses of resuscitation (not really a big issue, if you believe the limited data noted above). Some staff noted that when family members were present, they felt pressure to do more or less than was medically indicated.
Interestingly, in several included studies, the more experienced the practitioners--both in general, and with witnessed resuscitations specifically--the more likely they were to be in favor of family presence during resuscitation. I have to wonder what we see and hear that changes our minds about this as we gain experience.
I don't wonder, however, whether seeing her mother die--and calling the code herself--was exactly what this daughter needed. Whether or not it was standard procedure, or what we would have wanted for ourselves, it gave her the luxury of time to whisper in her mother's ear whatever she needed to whisper. And after months of telling us to keep going, it allowed her to tell us to stop.
I can't imagine what more we could have given her.
I've wondered this before, reading some of your stories about codes, so I'm just going to put up my layperson's hand and ask: What's the deal with the chasm between the codes you describe and the standard CPR training available to the public? I know there's a false serenity to the training one can get through the Red Cross, but if they can tell us about the possibility (likelihood?) of vomit, where are the blood and cracking ribs? Does amateur CPR even work?
I've added a new link to the above post that links from "ACLS" to the wikipedia page on ACLS. Lucky for me, it answers most of your questions...correctly!
Standard CPR is BLS, or Basic Life Support. As noted on wikipedia, a major difference between BLS and ACLS (Advanced Cardiac Life Support) is the invasiveness of the procedures involved: ACLS involves intravenous access, aggressive airway management (i.e., bag-mask ventilation or intubation), and administration of medications. Another major difference is the application of some medical knowledge to diagnosis and treatment: ACLS involves interpreting heart rhythms and integrating other elements of a patient's history and presentation into the immediate treatment.
As far as actual outcomes go, great question! When the most recent guidelines for ACLS came out, the evidence demonstrated that only CPR and early defibrillation (shocking of the heart muscle) made a difference in outcomes. I'm not sure if that's still where the data point, but I'll look it up when I have a free minute.
Any other thoughts?
Any other thoughts? Me? Um, yeah! First, thanks for the Wiki link, and the information about the apparent helpfulness of CPR. I've had a number of jobs where I've had to get certification (CNA, massage therapist, and an admin job at an adoption agency -- totally random), and apart from when I was working in nursing homes and home-care, it always struck me as sort of a strange requirement. If it helps, though, maybe They are trying to get as many people trained as possible just to increase the odds that folks will be in the right place at the right time.
Your main point in this post -- that families benefit from seeing ACLS in action -- is really interesting. Remember your long-ago post about NICU, and caring for those babies past the point of benefit to them for the benefit of their parents' sense of having tried everything? This seems like the same thing, on the other end... and it may intersect with that recent poll about divine intervention, too.
Amazing post. The point you make about the perspective of patients' families is huge; so much depends on the individual, and it's impossible to know their needs or beliefs. My mom, for example, said that bathing and handling my grandfather's body after his (relatively peaceful) death was cathartic and emotionally healing for her - but her brother had the opposite reaction.
Clinicians are truly in a tough position when they try to intuit and anticipate how family members will react to such an emotional situation. I don't know how you handle these things on a routine basis, much less share them with us here. Thank you.
Again, I am so glad you are able to find the time to write regularly. This is a beautiful and thoughtful post and still scholarly with your citation of the primary literature on the subject. You make me so optimistic for the future of medicine to know that you are rising through the ranks and training others.
Although I am related to MDs, I've never seen a code but understand that it can be complete madness whereby a family member might actually be in the way physically. However, in these less urgent cases you describe, perhaps there is indeed a good degree of comfort that can be imparted to family - instead of being told, "We did everything we could," they have witnessed that you did everything you could. I'd be interested to know if your institution, or any other for that matter, has a policy on family members being present during codes.
btw, kudos to that charge nurse. And keep it coming yourself - in sadness and frustration you bring us great optimism.
I think much of the shock of ACLS has been removed by the repeated and much dramatized versions portrayed on television/in movies. While that does not detract from the impact of it being a loved one, it is no longer unfamiliar and as terrifying, particularly at the end of a long struggle with illness. Allowing the family member to say when to stop gives them the last bit of control they have over the situation, a small benefit when they otherwise feel powerless. They understand the decision because they are part of the process of making it. That would be a comfort to me.
So, who is more important in all of this: patient or family?
What an amazing post, Dr. S! You are the best!
Signout I am so glad you are back. I love reading your posts.
Truly it restores my faith in medicine.
Like heather this reminded me of your NICU post. As a mom of a NICU survivor I cannot stress enough how important it is for the families to feel they are the ones making the decisions, or at least really feel that they have a say.
There are so many issues tied up in the one simple (yet elegant and not-simplistic) post.
There has been, as you've written, a great deal of talk about this issue. Also, there is some literature on code outcomes on TV vs real life (and the results are about as you'd expect...very, very successful on tv, not very successful IRL).
The whole idea of families witnessing codes may be even more important in the EC, where much of the literature on this is from. The ICU scenario is part of the problem with medicine...jeez, this is getting wordy. I think I'll continue this at my place. Thanks for bringing this up.
Thanks to all for the thoughtful and kind comments.
Abel, there is a range of institutional policies about family presence at resuscitations. I may save that for a future post. As far as I know, my institution does not have a clear policy on this.
Moneduloides, you ask an interesting question. The first review article cited in my post notes that in one study, 72% of patients and families questioned wanted families present at a resuscitation, if one occurred. I haven't had a look at the primary study, but it'd be interesting to see what proportion of patients alone had the same sentiment. Interestingly, patients who wanted family present tended to be younger and non-white. I am not sure exactly why.
Lisab, that's something we can't afford to forget. If we do, please remind us.
PalMD, you're welcome to jibber jabber as long as you like in my comments section. However, the post you wrote instead is a really good one, and I recommend it highly to anyone interested in the issue.
I'm a 58 year old female who lives alone.
Is there anyway to assure a DNR AND have someone to hold my hand at the end whether in home/hospice/hospital ?
I have no fear of death, but of dying.
so no matter what, seize your every chance can stay with your family, you never want to know the pain you lost them... trust me...
I know there's a false serenity to the training one can get through the Red Cross, but if they can tell us about the possibility (likelihood?) of vomit, where are the blood and cracking ribs? Does amateur CPR even work..
They understand the decision because they are part of the process of making it